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Misconceptions About Dementia

Yesterday, I overheard a health professional describe her own mother as not having “Alzheimer’s” but just “dementia.” I have heard this many times throughout my career in the memory care field, and it is something that I would like to clarify.

“Dementia” is actually an umbrella term used to describe a severe degeneration in the brain function of adults. This degeneration is progressive and extreme enough to interfere with a person’s Instrumental Activities of Daily Life (IADLs) – such as driving, managing finances, and cooking. As the dementia progresses, it most often will affect a person’s ability manage their own Activities of Daily Living (ADLs) – such as bathing, dressing, and toileting.

Alzheimer’s disease is one category under the dementia umbrella. There are many types and categories of dementias. I ask families to think of it this way: if a doctor says your loved one has cancer, what would your next question be? “What type of cancer?” As with cancer, dementia is the general term.

Another belief that I hear often and would like to weigh in on is when people say, “Getting a specific diagnosis is not important.” I have seen that a specific diagnosis can actually be useful to families and the individual with dementia.

Here is why: each dementia affects the brain and brain cells a bit differently. The behaviors exhibited by the individual, the progression of the disease, useful engagement activities, and medications that may be helpful will vary according to the type of dementia.

For example, with Late-Onset Alzheimer’s Disease, we know that the areas of the brain affected first will be those involved in processing, storing, and retrieval of memories. So one of the first signs that something is wrong will be short-term memory loss. Also, we know that with this type of dementia, progression of the disease is somewhat slower than other types. So family members may be able to plan for the future more effectively and also develop activities for their loved one that do not involve new learning, for example.

On the other hand, with Behavior Variant Frontotemporal Dementia, often the first areas of the brain affected are those that play a part in impulse control and emotion. So, one of the first signs of the disease would be a change in personality – for example, someone who has been cautious all of his or her life may dramatically change and engage in risky behavior. We also know that memory stays intact longer than in other types of dementias. Knowing this will often help families emotionally; they don’t just see their loved one as doing things on purpose to hurt them, and they can choose engagement that still accesses memory.

I think the exception to getting a specific diagnosis would be if a loved one is in the later stages of a dementia. If an individual is bed-bound or unable to speak, testing may be too disruptive for them.

Seeking out health professionals who are versed in dementia is vitally important to proper diagnoses, treatment, and caregiving. Ask professionals about their qualifications and expertise in this area. It will help provide a better quality of life for your loved one.

Lisa Daly is an aging, dementia, and caregiving expert with Positive Aging Transitions, who also serves as an AGE of Central Texas CaregiverU class leader. To contact Lisa, call (512) 797-4008 or email lisa.dalyboyd@gmail.com